NEWS

We are working on a way to easily test for SSADH from a dried bloodspot, but need some original Dried Bloodspot Cards used for Newborn Screening from SSADH patients within the United States.

Requesting Newborn Screen Dried Blood Spots

Each state has their own regulations for preserving the bloodspots. Usually the information is posted on the states web site if you search for newborn screen dried blood spot and the state that you live in.

For example the state of Wisconsin only holds the cards for 1 year but the state of New Jersey holds them for 23 years.
Typically the state’s web site will also have a form that can be filled out to request the use of the dried bloodspot or for health information. If anyone feels they are able to secure their SSADH child’s new born screen dried bloodspot, I would gladly help fill out the request form.

The medical professionals involved with SSADH feel that this disorder is significantly under or/and misdiagnosed. Being able to add SSADH to the Newborn Screen Panel Testing would be a major hurdle for our community.